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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

to be shocked that I was told "I didn't think cleft lip and palate happened in the UK".

142 replies

Sleeker · 11/05/2011 20:36

By someone in the job of parenting & pregnancy journalism. Shock

OP posts:
Cattleprod · 14/05/2011 10:11

Sleeker - do you know if the chance of passing on a cleft to your baby, and the severity of that cleft, is determined by the type of cleft the parent has?

No midwife or medical professional has flagged it up as a concern for me in this pregnancy, or when I was pregnant with DS. I would have thought they would have if the risk for all parents with clefts was as high as 4%.

Original poster
Sleeker · 14/05/2011 12:20

We had genetic counselling before getting pregnant. My husbands is extreme, son's is minor. There is no link on severity I have been told. But yes I was given a 4 percent chance. I don't know if this would have been raised if it were not for the fact my husband was still having repair surgery so it was on our mind and we specifically asked before getting pregnant.
Ii have also been told the my sons chance of having a cleft baby (so 3rd generation) would be 25 percent.

OP posts:
4madboys · 14/05/2011 12:53

i know two little boys with this condition, one is a toddler and has had his repaired and you would NEVER know, only i knew him when he was younger and the other is a 3mth old baby with cleft lip and palate, i have spoken to his mum a bit (on the school run etc) and i know he will have to have a few operations but their main concern was to get him feeding well and make sure he was robust and healthy before the operation. his mum is doing a fab job and he is a GORGEOUS chunky little boy with the most amazing smile!!

what i was shocked at, was that she has had to PAY for the special bottles he needs to feed, they have had to try a few diff kinds to find one that suits him and i just assumed that she would get them on the NHS? as it is she says she buys them from the cleft lip/palate charity? and so i am assuming all money made goes to the charity and its research etc? but i just thought as they were such a basic NEED and for a medical reason that they would be supplied free of charge? my naivety i guess :)

i am shocked that someone would think it doesnt happen in the UK, riddiculous thing to think imo. infact there was a VERY publicised case a few years back about a woman having a fairly late abortion 20+ wks after discovering her baby had this condition Shock :(

i think its amazing how good the surgeries are now and i would hope that children dont suffer any social stigma from the condition, wishful thinking maybe, but i know that the two little boys who i know with the condition arent doing so far, tho one is tiny and his siblings and others just refer to him as special, which he is and gorgeous to boot :)

Cattleprod · 14/05/2011 14:25

It hasn't been in the public eye in a non-third-world context recently though, with the exception of that BBC1 programme a couple of weeks ago (also portrayed as largely a third world problem though). The last time I remember seeing any awareness publicity was an interview with Carol Vorderman on daytime telly several years ago. Afaik she's a patron of the Cleft Lip and Palate Association, and her brother has the condition.

Maybe we need more awareness, although I guess with many more serious and life-threatening conditions around, clefts aren't seen as a priority for commissioners of health-related programming.

Original poster
Sleeker · 14/05/2011 14:30

CLAPA do a lot of work to try and raise awareness, but I agree the majority of what you see are the Smiletrain and similar adds. Which is great that these are out there - like in the programme the other week, Per Hall and other surgeons that go out there and operate on as many as they can in a few weeks are doing something life changing for the people involved. We are lucky that it's all sorted by the NHS over here.

And yes, whilst I would rather my son didn't have to go through surgery and other cleft related problems, at the end of the day I count my blessings. There are other more serious conditions, and I'm just grateful it wasn't one of those.

OP posts:
whoatethelastbiscuit · 14/05/2011 14:51

just backing up Sleeker, Harelip is offensive to alot of cleft families - and if I recall correctly when RK Rowling included a witch character in one of the HP novels with a harelip she was asked to amend it by someone or other, because of the risk of upsetting children born with the condition and she did, I think she rewrote her as a witch with a hairy lip, but not sure, I read about it so long ago, probably in a CLAPA mag - I have a dd with a cleft.
Maybe the journalist thought because cleft's can often be seen at scans people would abort, if so Shock and Angry, not the choice everyone would make hence so many of us here with experience.

Original poster
Sleeker · 14/05/2011 15:08

whoatethelastbiscuit can you abort for cleft??

OP posts:
lljkk · 14/05/2011 15:22

"Cleft" can mean a huge range of conditions,including when the entire skull is almost in two pieces. I don't think there's any evidence of anybody in the UK ever aborting because of a cleft that was operable .

boohoohoo · 14/05/2011 15:22

Sleeker, it seems as tho yes it's true, you can have a late abortion if your baby is found to have a cleft lip and palate (as far as I know the law has not yet been changed, apologies if I am wrong). There was a woman vicar who took this go court in 2002/4 but it was overturned by the high court, there is a lot about this case if you google it, but I found it a bit too upsetting and personal for me

lljkk · 14/05/2011 15:25

We don't know how severe the condition was in the vicar's much publicised campaign, Boohoo. It may be as awful as you think (someone bothered about a mostly cosmetic problem), or it may be as awful as I think (something incompatible with life).

What we do know is that two doctors had to sign the termination off , and I tend to doubt they both signed it off it was a minor condition.

Original poster
Sleeker · 14/05/2011 15:27

lljkk I tought people used to, but can't believe it's allowed now - but that's only my gut feel, I have no idea of the law.

Yes I've heard vague things but don't know the whole story around the female vicar - I'd just met my husband when it was all coming out, and he was upset by it and we didn't really talk about it much. I don't really know any facts.

We certainly were not offered an abortion, but a friend said that her friend of a friend of a.....etc had been. But I took this with a pinch of salt as I thought it might have been a chinese whisper type of thing! I think I'd have punched someone if they'd suggested it to me!!!!!!

OP posts:
lljkk · 14/05/2011 15:41

I just remember a few key things... I think the vicar has a very anti-abortion for any disability stance (her brother has Downs Syndrome, too?). She found out (iirc) about one case of late termination with cleft palate cited as the reason and made a national issue out of it. Lord help us all if the doctors okayed it for the wrong reasons :(.

I can see why you'd want to avoid knowing more about it, Sleeker, I avoid a lot of stories for that reason, now.

Just out of curiousity... but why is "harelip" offensive but cleft palate is okay? Is it just historical reasons that make one term ok & not the other? "Harelip" makes me think of hares, and they're quite cool, no?

I don't think I've ever known anyone irl with a cleft... I mean, I must have, they just had it repaired. But can't think of anyone ever mentioning it.

Original poster
Sleeker · 14/05/2011 15:47

Harelip is an old fashioned word that some people still use, because it's perhaps what they heard their parents etc call it, but they don't know the background to it (I mentioned earlier, the whole mark of the mother's union with Devil rubbish, also just likening one's child to a rabbit/hare/rodent isn't very nice, rabbits and hare's have a split upper lip, hence the likening).

Cleft lip and cleft palate are the proper, medical terms for the condition, so that's certainly how I prefer to hear it mentioned.

OP posts:
lljkk · 14/05/2011 17:04

rabbits aren't rodents, and fancy rats and mice are lovely pets.... but ok ok, I shan't be logical. It was used with prejudice historically. It's not a word I would use, anyway.

ajandjjmum · 14/05/2011 21:36

Harelip is an old fashioned term, and although DS was born with a cleft lip and palate, neither of us take offence when people say 'hare lip', we realise they're not trying to upset us, just speaking through ignorance. We just make sure we refer to 'cleft lip and palate'.

The Vicar had been born with a facial abnormality and was subject to a lot of hassle as she grew up. She had surgery and is infact a beautiful woman now, but obviously the idea of termination due to a facial disfigurement was abhorrent to her.

In DS's view, he can understand termination for a serious abnormality, but for 'something as minor as a cleft lip' it's wrong.

Interesting that you've been given 25% as a 3rd generation risk Sleeker - there are several clefts amongst men on DH's side of the family, although neither he nor his Dad are affected. We're still given the 1:20 as far as DS is concerned - although I'm praying their find a marker before he thinks of making me a grandma! Grin

GibberingGinger · 14/05/2011 22:27

Sunshinelifeforgood I have no idea of whether cleft palates/lips are genetic or not, I don't think the research has been conclusive yet. However

  1. learn to spell. It's chromosome.
  2. Chromosomes are bundles of genetic material. Hence genetic. Hence hereditary. Unless of course random genetic mutations occur - in which case it's just sheer bad luck, so back to original argument, no one knows
  3. Ye olde clefte palate shope Hmm again learn to spell

Oh and it's not just sleeker who finds hare lip offensive. It's an out of date and offensive term for cleft lip.

sliceoftoast · 11/06/2011 09:53

I have a cleft lip - repaired 45 years ago. I have taught many people with one and been involved in lots of charity events raising money for the cause. I have always referred to myself having a hair lip - no one has ever said to me this is offensive and I shudder that I might have been, without knowing, offending people by my use of the term. I have always thought that the term was linked to hair line as opposed to a hare - no one has ever said anything to the contrary. I worry that by now saying this term is offensive you are creating a problem - which children at school with a cleft lip might become the victim of bullying. I consider myself an educated person and I have never heard anyone talk of devils and rodents - I actually find it very offensive that some people seem to think that the term hair lip means this - are you not creating a problem here that does not actually exist?
I worry that the real problem here is that some parents are offended that their child has a cleft - which, if true, is very sad - and they need help to realise that their child is beautiful and wonderful and the SAME as everyone else.

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